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NORD
National Organization for Rare Disorders () is the voice of the community. Official U.S. sponsor of
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NORD 9h
SAVE THE DATE! NORD is pleased to partner with the Foundation for Rare Blood Diseases (SZB) on an externally-led Patient Focused Drug Development meeting on Pyruvate Kinase Deficiency (PKD). Please plan on joining us Friday, 9/30. Registration will be coming soon!
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NORD 12h
Don't wait! Early bird pricing for the ends this Friday, April 26! Register today to save on your ticket to what promises to be a valuable and enriching experience for the community. Register here:
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NORD 12h
Replying to @HopeSupportive
A very cute miracle! Thanks for sharing,
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NORD 14h
NORD's President & CEO, Peter L. Saltonstall, sat down with during to talk about the challenges facing the community, including the perception that drug pricing for orphan drugs is a driving force behind rising drug prices.
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NORD Apr 23
Families in the community, including leaders from Member Organizations, speak out on banning embryo editing.
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NORD Apr 23
Learn about from the nation's experts at the annual Family Conference in Chicago, July 11-13.
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NORD Apr 23
HURRY! ticket prices increase after this coming Friday, April 26! Don't wait to register for this enriching experience that will host in Houston June 21-23! Learn more & register at
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NORD Apr 23
Missed our yesterday? We had a great discussion w/ & patients & families about managing relationships in . You can view the conversation by searching the hashtag. Thanks again to all those who participated!
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NORD Apr 23
"You are his brother, his protector and his best friend. You are the rock your brother needs." Retweet to show some love to the siblings in out there. They're warriors too!
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NORD Apr 22
Follow on Instagram for patient stories, zebra features and more!
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NORD retweeted
CheckRare Apr 22
Looking forward to attending Rare Impact Awards in Houston, TX on June 21-23. Very happy with to be a media partner for this meeting.
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NORD Apr 22
Replying to @LacyFowler417
Scholarships are now closed but early bird pricing ends on Friday. Make sure to register before then to save on your ticket. We hope you can make it, Lacy!
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NORD Apr 22
Replying to @cmutena
Thank you for joining the convo today!
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NORD Apr 22
We hope to continue this conversation with you all during the June 21-23 in Houston! For more information about other topics we’ll address, please download our agenda:
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NORD retweeted
Lydia L. Seiders Apr 22
Thanks for hosting a and for your dedication to the patient community! For those interested, I'm available to discuss Network with you. We'd love to add your name to our list of voices!
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NORD Apr 22
Again, a big thanks to our co-host and to Diane Murrell for her expertise on this subject!
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NORD Apr 22
We'll certainly miss you!
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NORD Apr 22
That’s a wrap!! Thank you all for joining us and for sharing your insights & experiences as someone in a rare relationship.
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NORD Apr 22
Replying to @TexasChildrens
Thank you, for helping us to bring this great conversation together today! Can't wait to continue the convo at in Houston!
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NORD retweeted
Rachel Martens Apr 22
Replying to @RareDiseases
A2: the World Health Organization has a great philosophy for things to consider in childhood disability but I think can represent aspects of what overall health can look like in
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